Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice

Clark, K, Duckham, M., et al., , Guillemin, M, Hunter, A, McVernon, J, OKeefe, C, Pitkin, C, Prawer, S, Sinnott, R, Warr, D and Waycott, J 2019, 'Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice', Ethics and Information Technology, vol. 21, no. 1, pp. 59-73.


Document type: Journal Article
Collection: Journal Articles

Title Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice
Author(s) Clark, K
Duckham, M., et al.,
Guillemin, M
Hunter, A
McVernon, J
OKeefe, C
Pitkin, C
Prawer, S
Sinnott, R
Warr, D
Waycott, J
Year 2019
Journal name Ethics and Information Technology
Volume number 21
Issue number 1
Start page 59
End page 73
Total pages 15
Publisher Springer Netherlands
Abstract The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed the development of guidelines orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education.
Subject Pattern Recognition and Data Mining
Geospatial Information Systems
Information Systems Development Methodologies
Keyword(s) Bioethics
Data security
Data sharing
Digital data
Institutional review boards
Internet research
Privacy/confidentiality
Research ethics committees
DOI - identifier 10.1007/s10676-018-9490-4
Copyright notice © Springer Nature B.V. 2018
ISSN 1388-1957
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